HER2 Support Group Forums - View Single Post - Something that seems to work for diarrhea

hutchibk · 06-18-2009, 08:23 AM

Being on Tykerb/Herceptin comes with the extra-exciting and totally unpredictable experience of IBS like symptoms (I don't have IBS, but my symptoms seem very IBS like)... for one week or month everything can seem perfectly normal and then suddenly without warning I will get a day (or 5) that amount to oops, hello, ummmm, where's the nearest bathroom, and I mean NOW?

I want to share with my sisters and brothers two things I have learned recently that seem to REALLY help keep things REALLY normal (and hopefully consistenly normal with no surprises), at least for me. (check with your doctor first, but this is what my gastro doc has asked me to try - with fantastic results, I must say...)

1. as I posted recently somewhere, it seems for me at least, that chewing gum increases and helps instigate IBS like symptoms. I only started chewing gum occasionally in the last 6 months, and I can tie a number of IBS attacks to the times that I have put a new pack of DoubleMint in the car and chewed through it... usually in about a week's time. I then learned from a friend with real IBS that chewing gum is a no-no for her. So, I have stopped the gum and it seems to have helped many of those symptoms stop as well.

2. My Gastro doc has offered a solution as well. He wants me to be able to tolerate my Tykerb/Herceptin regimen with as little side effect as possible so he works with me to come up with solutions. This one he asked me to try a few months ago, but I put it off because I was having a "good month" and thought everything was normalizing on its own accord... until it wasn't. So, I have been doing what the doc ordered and the result in just a few days time has been extraordinary in my opinion...

Citrucel. Dietary fiber (which I always thought was for constipation and was counterintuitive to what I was experiencing... but I was wrong - it is a normalizer for symptoms that span the range from constipation to diarrhea). Simple, straight forward, successful. I bought the pills instead of the powder. I take two a day and WOW.

So my friends, just wanted to share some poop (pun intended) with you on a great solution should anyone be looking for a great solution...

It really has me whistling dixie these days!

06-18-2009, 08:23 AM	#1
hutchibk Senior Member Join Date: Oct 2005 Posts: 3,519	Something that seems to work for diarrhea Being on Tykerb/Herceptin comes with the extra-exciting and totally unpredictable experience of IBS like symptoms (I don't have IBS, but my symptoms seem very IBS like)... for one week or month everything can seem perfectly normal and then suddenly without warning I will get a day (or 5) that amount to oops, hello, ummmm, where's the nearest bathroom, and I mean NOW? I want to share with my sisters and brothers two things I have learned recently that seem to REALLY help keep things REALLY normal (and hopefully consistenly normal with no surprises), at least for me. (check with your doctor first, but this is what my gastro doc has asked me to try - with fantastic results, I must say...) 1. as I posted recently somewhere, it seems for me at least, that chewing gum increases and helps instigate IBS like symptoms. I only started chewing gum occasionally in the last 6 months, and I can tie a number of IBS attacks to the times that I have put a new pack of DoubleMint in the car and chewed through it... usually in about a week's time. I then learned from a friend with real IBS that chewing gum is a no-no for her. So, I have stopped the gum and it seems to have helped many of those symptoms stop as well. 2. My Gastro doc has offered a solution as well. He wants me to be able to tolerate my Tykerb/Herceptin regimen with as little side effect as possible so he works with me to come up with solutions. This one he asked me to try a few months ago, but I put it off because I was having a "good month" and thought everything was normalizing on its own accord... until it wasn't. So, I have been doing what the doc ordered and the result in just a few days time has been extraordinary in my opinion... Citrucel. Dietary fiber (which I always thought was for constipation and was counterintuitive to what I was experiencing... but I was wrong - it is a normalizer for symptoms that span the range from constipation to diarrhea). Simple, straight forward, successful. I bought the pills instead of the powder. I take two a day and WOW. So my friends, just wanted to share some poop (pun intended) with you on a great solution should anyone be looking for a great solution... It really has me whistling dixie these days! __________________ Brenda NOV 2012 - 9 yr anniversary JULY 2012 - 7 yr anniversary stage IV (of 50...) Nov'03~ dX stage 2B Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo. Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin Feb'07~ Genetic testing, BRCA 1&2 neg Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin May'07~ Started Tykerb/Xeloda, no WBR for now June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic! Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2 Oct'07~ PET/CT & MRI show NED Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone) Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors. Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen. Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen. June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen. Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice. Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots. Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011. Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah. "I would rather be anecdotally alive than statistically dead."